cheeringforcaitlin

[cheeringforcaitlin]

a new ....decade?

January 1, 2020

I have grass.

Funny observation isn’t it? I have grass…WHO CARES????

Well, it's Florida; so, for one, my HOA cares, a lot, if I have grass or not. 

But its January 1st, 2020..a new decade- my big statement for the day is that I have grass?

Yes, yes it is- my big statement for the day is that I have grass.

Last night as the kids and I snuggled down before midnight I ran thru social media quickly. There I found some profound statements about being born in the 70’s and what that means as the year turns 2020. I found some profound statements about what we can expect in the next decade for children born around the year 2000. Honestly, I read them out loud and dismissed them…until I came home and saw my grass.

The last decade has been…a lot.

just…..’a lot’.

(And I hate the word ‘a lot’…its an escape, a ‘gimme’, an adjective that doesn’t do any justice in defining anything.)

The last 36 hours have been my past, present and future wrapped up, spun around, blended together, shaken out and shown to me; by way of the grass in my front yard.

I’m not a ‘time’ person. I don’t ‘measure’. Instead I feel. I respond. I react (sometimes with too much intensity or not enough patience). I love and trust and do and care and follow my heart and my gut.  I don’t measure time, distance or space. 

I measured my grass today though….

In the last decade, (this ‘not-time-measuring-person’) has done a lot….gave birth to a miraculous 4th child, survived the death of  an incredible daughter, built a nonprofit (with the help of some incredible families and support of those closest to caitlin), gotten divorced, sold and bought a home and went back to work full time after more than a decade. I’ve loved and lost. I’ve built and broken.I’ve taken advantage and been taken advantage of. I’ve stormed and sheltered.  (And so so SO MUCH MORE!)

And I grew grass.

In the last decade I have done things that have embarrassed me, and made me ashamed…and I have done things that have been required of me when I wanted to shut down instead.. I’ve done some things I’m proud of, and some I am not. I’ve done some things I will talk about to everyone and some things I will only discuss with a few. I’ve been broken (more than once) and I’ve been bent. I’ve been hurt, and I’ve hurt others. I’ve succeeded, and I have failed miserably. I have fallen and I’ve gotten back up. 

And I grew grass.

For 15 months, my HOA has only cared that my yard looked like hell and I had weeds instead of grass. They don’t care about the rest of my life (or my decade). They wanted to see grass, and no weeds. 

I’m not the only one who has survived struggles in the last decade- we all have. They aren’t the same, but we can all recount significant struggles in the last 10 years. 

I hope we can all recount the successes too. I hope we can all recount the love. I hope we remember the laughter and the hope and the fun and the moments that built us. I hope we can all recount ‘life’. 

I can’t change it. I wont regret it. 

Read that again.

One more time.

I can not change it; I will not regret any of it.

I lived it. 

And as I step forward, I will try to make better choices. I will try to be more genuine and less selfish.  I will try to be better, and braver, and more successful.

But I will also count my blessings. I will love harder. I will try more. I will be grateful more often and express myself with clarity. I will apologize when I should, and give forgiveness when it is not asked.  I will be more honest with myself and those I care about. I will be strong(er). 

And I will continue to grow the grass I finally grew.

I hope each of you will be gentle with yourselves. I hope you will live without regret. I hope you will love strongly, cross over the bridge of fear, take chances worth taking and find happiness. I hope you will embrace your successes and learn from your mistakes. I beg that you live life without regrets. 

I hope you will grow each day….just like my grass.

Happy New Year, happy new decade….

All my love, every day, every year, every decade, d

[cheeringforcaitlin]

Happy Birthday  (if you start to read this, please read it to the end...)

The birthday song

You just giggled, didn’t you? If you didn’t, you should have…

My kids sing the birthday song, and for years they added “you live in a zoo, you look like a monkey and you smell like one too.” They are silly. So.Silly!

How many times have you had to sing Happy Birthday, and rolled your eyes and mouthed the words because, really, do we HAVE to sing happy birthday ONE more time?

I remember being a kid and singing happy birthday and at the end we added “and many more” (I know, I date myself- but honestly, I’m not THAT old!)

And in the history of the Happy Birthday Song, it used to be followed with “He’s a Jolly Good Fellow” (now THAT would make you old!)

Ah, the happy birthday song….

I wish I could sing it Friday,

And I wish I could add “and many more.”

Instead, I find myself reflecting on the ‘and many more’ part of it this year. We aren’t promised or guaranteed those ‘many more’ are we? Some times we aren’t even so much as offered them. We can’t be sure of them. And we certainly can’t take them for granted

Instead, there comes a time when ‘many more’ turns into ‘one more’ or sadly,  ‘no more’ and we long for those days again; of happiness and celebration and the presumptuous ‘many more’ to come in time. Suddenly, they are stripped away from us without warning and we aren’t sure what to do.

My own counseling after Caitlin’s death taught me to ‘leave her 5 years old forever’ and ‘never let her get older’. If you asked me today how old she was ‘turning’ I wouldn’t know the answer. It simply would have been ‘5 (pause) again.’ 

Logically, my brain doesn’t compute or balance the fact that I continue to live and get older, but she doesn’t. Sensibly, my mind can not comprehend a life that goes on with 3 children who grow and thrive and are beautiful in a world that continues to move forward without their sister. 

Somewhere, my thoughts get stuck that one of my babies isn’t growing up.

BUT,

Friday I will find that place and space that makes NO sense to my heart or my mind.

 I will smile as much as I cry.

 My laughter will equal my tears.

 My pain will run as deep as my joy.

Because grief is just as big as love. We can only hurt if first we have loved greatly. And I have loved so greatly.

What an honor I have been given to be the mother of 4 incredible children. Just as I celebrate Courtney on December 10th, and Cole on January 7th and Campbell on January 13th, I will celebrate Caitlin on May 17th. And I will do so every May 17th.

(This next part is why I asked you to read this through to the end)

May 17th, and Caitlin’s birthday,  is another reminder about how short life is. It is an opportunity to let people know how much we love them and what they represent and signify to us and our lives. This is a recognition of the fragility of life, and what we are supposed to do; live our lives fully and completely, leaving no day wasted, no thoughts or feelings unsaid, and no actions left for ‘later.’ May 17th is a gentle nudge to make sure we are saying what we need to say, and doing what we need to do, and that we live each day entirely and with intention. 

To me, it is an opportunity. (Yes, I ended that sentence right there. I’ll do it again for impact.) 

It is an opportunity. Seize it, and don’t let it get away.

a quick note from a good friend tonight reminded me that “Caitlin’s legacy was to love.” I hope this message leaves you able to reflect, on love, life and what’s important to you.

Life has changed in the years since Caitlin was born in 2007. It certainly has changed again in the years since she has died. 

Quietly, when I sing happy birthday now, I wish ‘many more’ to the recipient, as my gift, as my wish, as my hope…for so.many.more.

My wishes and hopes to each of you on May 17th (and every day) 

is for love, laughter and full life.

XOXO, d

“while you’re sitting around thinking about what you can't change and worrying about all the wrong things time’s flying by, moving so fast, YOU BETTER MAKE IT COUNT ‘CAUSE YOU CAN’T GET IT BACK”

happy 5th birthday baby girl- I love you

[cheeringforcaitlin]

Cheering for Caitlin 5K

Come help make a difference. Come help make a change in pediatric brain cancer.

https://runsignup.com/Race/FL/Oviedo/CheeringforCaitlin5KandFestival

[cheeringforcaitlin]

It's been too long...

Hi, IT’S me, i’m BACK Yep, here I am… writing again…and I have missed it more than you know… This is the place where my fingers fly across the keys and my heart and head find a place to breathe, a place to rest…it’s been too long Why so long? Where have I been? What’s kept me away? Well, its a muti-answer question…. Maybe herein lies those answers… If you are close to Oviedo, you remember the fires that so many of us were forced to evacuate from just a few months ago…it was terrorizing and frightening all at once. And the fear didn't last for only that night or two we weren't allowed in our homes- it lasted the full 2 weeks that the Oviedo Fire Department kept watch and informed us of the daily to-dos. The area surrounding the fields and and conservation lots that back up to our delicate neighborhood were destroyed- only the determined efforts of the OFD kept those flames from taking our homes away. This morning, on an energy fueled run, I remembered the calls and texts as I stood at Courtney’s cheer competition in Tampa; I recalled the emotions and feelings that surged thru me, trying to balance my fearful need to get home, and my helplessness at being so far away from evacuation and disaster… Today, as I ran a different route than normal, I exposed my self to that burnt out area… And I saw what I’ve been looking for, what I didn’t know I NEEDED.. An inspiration to put it out there again… A reason to write… My heart and my head have been locked up: missing the ability to write, and the release that comes in finding the words to express my heart… There, in the field of matchstick trees, and brown vegetation that found its demise in the heat and destruction of the flames; I found what I NEEDED to find… A magnolia tree. Well, not one magnolia tree, SEVERAL magnolia trees… When we built our house 12+ years ago, I wanted to surround us in magnolia trees. I was discouraged by several people, who explained they are messy and hard to up-keep…so I bailed on that concept and went a different route, even though I loved them. Today, I saw them, along the edges of that burned area. I smiled, because there, on the outskirts of destruction was life. Trees that were not only green with leaves, but full of blooms and blossoms, waiting to explode! It was almost something a true artist would stop and look at; pull out the chalks or the paints or the pencils or the right medium to make it come alive. I thought,”I’m so grateful to witness such life! Among destruction, there was life.” Then, as I ran, I looked a little deeper. With Eminem pounding in my ears, (dont judge, its my run playlist) I looked deeper and I saw it. Deep within that fire zone among the broken and the brown, I saw it…I saw magnolia trees covered in white flowers; from the base of their trunks to the top of the trees, deep deep within the ravaged area; magnolia trees… My first thought was “STRENGTH”, but that wasn't really what they defined at that moment. NO, instead, as I continued on, I thought “SURVIVAL”… Because they shouldn't be able to bloom from base to top; some part of them should be finding their way, they should be figuring it out, they should be hibernating until it all comes together, right? They can't be able to show themselves until it all makes sense…. And then, I realized they are where I am… I should be stuck, right? Not thriving and strong, right? Instead, I’m somewhere in between, and damn if that place isn't going to be survival in the most beautiful way I can pull it off… Does it still hurt? Yes, sometimes worse than the initial loss Does it get better? Yes, sometimes I laugh and don't feel guilty Am I a magnolia? Yes!!!! I am messy, and fall apart without notice- but will I climb above the devastation and disaster and disorder below and around me? Hell yes, because that’s who I am and how I am built… So, Let me rephrase, It’s ME, I’M back…(reread the first sentence to gain perspective if you must) And I will write when it works, and I will post it because it’s real… because my heart and head find release. I hope you’ll come along and find something meaningful like you did before… I’ll write because I need to and because you have always been a good listener, a fierce supporter, and you’ve been able to connect… Maybe some of you need to be reminded that you're a magnolia tree too- they are messy! But wow! they can bloom and blossom among destruction and diversity… My love and friendship- with thanks to those old, and new, and reconnected, I am so grateful for each one of you… Xoxo, d

[cheeringforcaitlin]

REGISTER NOW!

https://4agc.com/landing_pages/79956b47-3a0e-484d-9410-fa80bc13d945#.WLN_wxiZOYU

[cheeringforcaitlin]

REGISTER NOW!

[cheeringforcaitlin]

Why you should keep saying everything you're not supposed to say...

This has started off a couple different ways..

Let’s talk 6 days ago…Sunday May 22- the Cheering for Caitlin 5K and Festival. You all showed up, from near and far; 1000 people at the start/finish line in Oviedo and more than 150 around the country participated virtually. I’ve struggled to tell you the rest of the numbers. I have rested upon this as a metaphor: if you take a bucket, stick a hose in it and turn on the spigot, how long does it take to fill that bucket? 10 seconds? 20 seconds? It’s full quickly and you carry on with whatever it is you need that water for, right? What if you need that bucket full of water, and you stick it under a leaky faucet that drips a drop at a time? Well, you’ll get a bucket full of water; but it will take longer and I dare to bet that you will be careful with it because you are so grateful for each drop that went into filling up that bucket, correct?

The money we raised Sunday was not raised because we had a hose; it was raised through a drippy faucet. Little by little people sponsored and then registered. Little by little, I watched as we were able to raise $43,000 that will be go back to the Children’s Brain Tumor Family Foundation for important research. What an incredible impact that money will make on the research being conducted right now! Thank you, all, from the bottom of my heart. I know you doubt if it makes a difference; “Does one registration really matter?” The answer is YES; a drippy faucet WILL FILL a big bucket! Thank you ALL, for filling that bucket!

The rest of this post won’t come back to relate to the few paragraphs above, like it often does. I wont draw lines or make metaphors that come full circle to what I’ve just said. I just want you to know that. (See the link below to watch a special message from Caitlin’s Dr. Mark Souweidane, as he has a thank you for each of you.)

I read a lot. I read a lot of different things. Up until recently (since Caitlin’s death), I refused to allow myself to submerge back into anything fiction; everything I read was non fiction. Many times, I read about parents, and their children. I didn't read only about parents that lost their children, or children who were sick. I just felt consumed with reading about families with children. Admittedly, among those readings were many articles and opinions about parents who had lost a child.

More often than not, each article is focused on (or leans toward) what “you should/shouldn’t say to a grieving parent.” You can use synonyms for some of those words, but the focus of the article doesn't change.

Reading those articles will give a lot of information. I can summarize ALL of the articles I’ve read in just one paragraph. (Please keep reading past this…)

The helpful person needs to understand the difference between the grieving parent wanting to be left alone and not wanting to talk about it. Give us our space, but stay in close contact by continuing to call, visit, do daily chores (and if we don't respond, keep trying BUT know when we want you to stop all together, even though we wont tell you- you should just ’get it’.) Don't stop trying, but don't push. Forgive me if I am not interested in small talk, but don't focus only on my sadness and my child. And my favorite advice; talk about my child- don't talk about my child.

Are you confused? I hope you are- because I am, and I’m the “grieving parent!” Really, how are you supposed to make sense of any of that? If I were you, I wouldn't say any thing at all.

Article after article is written about what you should and shouldn't say to the grieving parent.

The lists go on and on with specific and detailed quotes about exact words to use/not use. Editorials explain in extensive (conflicting) detail the definitive phrases that will offend or comfort.

Its all crap.

I’m sorry, but it is all crap.

My child died. It is, in fact, an absolute and complete tragedy.

And what have many people done in that time? They have spoken to me. They have cared enough to approach me (a stranger at times) and they have offered their love, their compassion, their support, their hearts and their hugs. What on this earth makes me worthy of such kindness?

Shortly after Caitlin was diagnosed, the Orlando Sentinel ran an article. It was Mother’s Day. We still had a home phone at the time. It was an unlisted number (but there is the internet). I won't answer a call from an unknown number, not then and even not now most times. But I answered that unknown number that Sunday morning as we laughed and made breakfast, and giggled and loved being alive and together. An elderly woman's voice crackled on the other end of the line. I put a finger to my vacant ear and motioned to shush the noise. The woman asked if I was me. And then she told me she read the article in the paper, and she wanted to tell me how to pray so that my daughter would be saved. My immediate and extended family was in the room and could hear my call…(they monitored me to ensure the safety of my heart)…they started softly and slowly, and built in their frequency and volume…”hang up…Hang Up…Hang Up!!!…HANG UP NOW!!!” They were so mad, but I didn't hang up until the conversation was over.

I’m not into being the martyr. Often, I hope I’m just the opposite.

But I wont ever be offended, hurt or angry by what someone says to me. (I wont always agree, but that’s ok too, and it doesn't matter if you continue reading.)

You are told: Don't say “I know how you feel” because you just don’t. Here is my answer: You probably don't know how I feel, but your words say “Your pain must be so deep that I WANT to be able to relate and and help take some of that pain away from you…..” I’m so grateful you would try, I know my pain is so scary to another person, especially a parent.

You are told: Don't say “At least you have other children” because they can’t replace or make up for the child that died”. Here is my answer: True; nothing will replace my daughter, but if I didn't have my other children, I can assure you I never would have gotten out of bed. I would have stayed there until I died. That is an honest and true statement. My other children forced me to live when I didn't want to.

You are told: Don't say “She is in a better place”. Here is my answer: Let’s just hit this head on; she IS in a better place, at least I believe she is. I wish she was in my arms, in our home, never left us. I want her here! But if she isn't in a “better place” than where she was in her last days, well, I’m shutting down and hiding and you should come get me…

And finally, you are told: don’t say “you are so strong/I couldn't ever have made it through what you are going through/have been through”. Here is my answer: You’re right. Even on my absolute worst days, I have to believe in my strength, even when that strength completely comes from those who love me. You are right, you might not make it through this and with every fiber of my being I hope you never have to try to. THANK YOU for really thinking that highly of me; because it isn't what I see in myself, but it’s nice to know that you see it, because maybe that means I will find it.

What does it take to speak to someone who has lost a child, and offer some kind of sympathy? What does it take to step completely outside your comfort zone in order to offer some kind of solace to a hurting heart? It takes a lot, a whole lot. It is so much easier to keep your sunglasses on and pretend your eyes didn't dart that way. Or to turn your shopping cart down the aisle and pretend to be absorbed in whatever is on the shelf. Or to stay in your seat and not move to make awkward conversation. (Remember, I am an introvert at heart- I don't like having to talk to people, it frightens me sometimes.) But I will always make the effort, when I can, to offer something kind or supportive to someone else. And nothing contradicts the introvert in me more than being approached by someone who has something caring to say to me.

So keep saying it; say whatever those articles tell you not to. Say what you feel. Say what you believe. And not just to me- say it to each other when someone is hurting, for whatever reason. And if you're the hurting one, try not to be judgmental. Will it always be the right words? Hell no, it won’t be the right words.

But I beg you to look past the words, and stare into the sentiment. I guarantee you will suddenly hear those words differently.

Thank you, to each you that steps outside your comfort zone, and says “something” to another who is hurting, regardless the reason. And if you are hurting, take a moment to soar above the words said, and dive back down into the effort and energy behind those words. I am certain they are spoken with love at their core, and support for you as their wings. Let the sensitivity of their message and their genuine origin reach your heart, regardless of the actual words used to arrive at their destination.

Give support without fear. Accept support without judging the words behind the intention.

Thank you, to each of you that has pushed your sunglasses on top of your head to look me in the eye, or steered your cart in my direction, or gotten out of the bleachers to give me a kind word, or hugged me when you weren't certain of my response, or just said something because you couldn't say nothing.

Keep speaking, with kindness. Keep listening, with acceptance.

my love, always and forever        (because its the best way I was taught to love, by the very best person), d

https://vimeo.com/168497580

[cheeringforcaitlin]

To register for the 3rd annual Cheering for Caitlin 5K and Festival, locally or virtually, go to https://www.cbtff.org/cheering-for-caitlin-5k-and-festival/ All proceeds benefit pediatric brain tumor research through the Children's Brain Tumor Family Foundation

[cheeringforcaitlin]

black and white rainbows

My mom tells a story of when she was younger. She would babysit for some of the neighbor’s kids regularly. She laughs as she explains that one family in particular had two children who were ‘nightmares’ to babysit for, but she accepted every offer to care for these children. Seems odd, right? I figured they must have paid her really well, but that isn’t the reason she stuck with them. They had a television. Not just any television, but a color television. And she gets excited when she retells the story of seeing the first color commercial; a Jolly Green Giant commercial. She says she could have watched it over and over because the color was so ‘incredible.’

Television has come a long way since the time my parents were young. My dad tells of sitting around the radio with his own father, listening to shows and sports. My parents have watched as technology has brought them from those radio broadcasts, to black and white, then color television. There has been analog to digital; antenna to cable to satellite, HDTV, LCD, and LED, on demand and DVR.

I’ve always been honest; as honest as I could be without giving you too much of the “ugliest” parts of losing Caitlin. In the last 2 years or so, I have attempted to give you a look into my thoughts, ideas and journey with an optimistic view and the positive lessons I’m learning along this way.

So this is another honest post…Some ‘times’ are hard; they can be moments, minutes, hours, days, weeks. The duration can vary. The feelings are the same though; somewhere deep down inside of me, an indescribable ache becomes restless and it transforms from a deep, dark, lightless color to a brilliant, dynamic jewel tone. My heart hurts, physically, and I usually put my hand over top of my chest, as if to cover it and hold it together. My throat burns and my eyes begin pouring tears before I can stop them.  Sometimes I’m embarrassed. Sometimes I’m angry at myself. Sometimes I’m just sad. But almost always, during these ‘times’ I want to fade away. Not all the way gone, just into black and white, like in the Wizard of Oz before Dorothy opens that door after the dreadful storm. It could wash that painful brilliance back into a more tolerably muted tone. Who needs ‘magenta’?! And we could go thru life not arguing if it is ‘teal’ or ‘aqua’…does anybody really know the difference?!

It seems an easier, simpler way to live, doesn’t it? In those painful moments, I long to wash away the color of life; dull it so the pain can’t get so intense. Movements and thoughts and feelings would only be black or white, or some shade in between. Living in a monochromatically black/white world gives the illusion of protection and a sense of safety.

Campbell…oh my Campbell… I want you to stop reading and close your eyes and think of words that describe Campbell; either from personal interactions or my stories and descriptions.

As sure as the sun will rise, I’m certain of some of the words you did not use in that characterization. Quiet, slow, dull, boring, inactive, unanimated, lifeless, monotonous. (And I admit that I am fearful of some of the words you actually DID use to describe her.)

Campbell brings life ‘alive’. She questions and tells; she watches and listens and tastes and touches with intensity. She is busy (oh SO busy!) and she talks (and talks and talks). She is fiercely determined (I’m not sure where she acquired this trait), and curiously observant. She gets red in the face because she plays without holding back; she loves the exact same way. She wants it all, everything she can grab and all that is beyond her reach. While she exhausts me to the point of collapsing, I am enthralled in watching her as she ‘lives’.

And there, is a gift, given to me collectively by my youngest daughters. (This time) they have given me the gift of insight and appreciation in all that is around me. Caitlin has opened my eyes, and Campbell makes sure I keep watching.

Campbell is the Jolly Green Giant commercial. Campbell is the moment Dorothy opens her front door in the Land of Oz. She is color to black and white, she’s digital to analog. (Heck, Campbell is bigger than HD, LCD or LED…that child is absolutely 3D and you don’t need the glasses to see it clearly!)  She is a full spectrum of color that demands those jewel tones, and neon colors. And in her ability and enthusiasm to make life ‘more’ of everything, she continues to show me that life in gray wouldn’t allow me the colorful intensity for the good I see and know and feel. Shades of black and white would blend together, and become less distinguishable. The pain would be easier, but the love would be obscure and dull instead of vivid and remarkable.

Campbell is right, life is meant to be experienced in full color. How else would we ever find those glorious rainbows?

I hope you find the colors in your own life.I hope you help others find their colors. I hope they glow with brilliance and that you never put your sunglasses on to make them less than all they are meant to be.

my love, d

[cheeringforcaitlin]

the liberty bell (yes, the liberty bell)

Recently I've been reminded of the 2 things I took most for granted as a child.

The first is the Liberty Bell. (Go ahead, laugh...it's going to be comical.) I didn't like history in high school. (Did I TAKE history in high school?) I didn't like it in college, and I still don't like it when I'm trying to help Courtney and Cole with their homework. Give me algebra (I love algebra- it's just a good puzzle.) Give me humanities, or creative writing, or anatomy and physiology...but please don't make me talk about history; not world history, not American history, not Greek or Roman, not ancient or current.) That said; as a (young) kid, growing up in the suburbs of Philadelphia, we took school field trips to see the Liberty Bell (probably Independence Hall too) regularly. So, as that kid (who wasn't fond of history), it became commonplace and redundant to see the Liberty Bell (don't judge). At some point, in my head, I adopted the conclusion that all major cities housed a Liberty Bell; New York, Chicago, Washington DC, Miami, San Fransisco, New Orleans, probably Las Vegas too. You get the picture. I won't admit how old I was before I understood there is only one of those crazy historic bells.

The second thing I took for granted as a child is not quite as humorous as the first, but was as easily missed... Love...but not just any love; unconditional love. Just like that Liberty Bell being in every major city, I thought, if you 'love' you just ‘love’; there aren't different types or designations. It's part of the definition; there is no teaching it, no explaining it, really no understanding it...If you love, you love completely, wholly, without pause or exception, without hesitation or guidelines, without ...without anything, really...

Unconditional: “not limited by conditions: absolute”   (synonyms: actual, complete, decisive, indefinite , entire, flat out, no catch, no ‘ifs’ ‘ands’ or ‘buts’, unconstrained, unquestionable, unrestricted, whole…)

Just like in the Pflaumer household in the 70’s (through to current time); in the Downing household, “unconditional” comes from a specific place (even though we don’t know it), with a specific definition (even though we’ve never defined it) and a specific level of expectation (even though we have never spoken of this assumption.)

Here, “unconditional” means “absolutely,”  “unconditional”

It’s September. A quick look at Wikipedia, and anyone can quickly observe that September is an awareness month for the following: National Guide Dog Month National Hispanic Heritage Month National Honey Month National Prostate Awareness Month National Recovery Month National Wilderness Month Orthostatic Tremor Awareness Month Arnold-Chiari Malformation Awareness Month

All worth while causes and issues…not a single one that isn't important to someone because clearly enough people have cared about the issue enough to get it recognized. (And honestly, quite a few of these issues ring true to people I care about greatly…)

It seems selfish then, for me to get take this opportunity to get on my soapbox and cry about Childhood Cancer (again). Right? There are other causes, other cancers…

But, in our house, September stands for Childhood Cancer Awareness Month. So, in loving with that unconditionality, comes an undefinable responsibility of some sort that we have to honor (at least minimally)…

Because of my unconditional love, I find it worthwhile and needy… I find it my responsibility and my job (thank you Jeff for allowing it to be my ‘job’)….

Its an obnoxious train of thought to think childhood cancer would never effect my family (one that is difficult for me to admit out loud). It is also a little pretentious (and I hate pretention). So blame me tonight, for being guilty of speaking out about something that has encompassed (still encompasses) my family. Forgive my pretentious behavior in thinking that I have something worthwhile to say. Forgive my need to stand up and speak (and I don't prefer public speaking)…

Tonight, know that there is not one single text, email, word, emotion, gesture, dollar that is taken for granted by my family… for those that read, and believe, and follow, and do, and give, and feel, and support…my unconditional gratitude is given right back to you…

One of my nearest and dearest and bestest friends has continued to whisper in my ear; “if your family had to survive losing Caitlin- then clearly there must be something you should be doing/saying/writing…” (I believe her, unconditionally, by the way.)

Yet, I feel suddenly (or again?) stuck and lost and inadequate in my words and thoughts. My voice feels like a whisper compared to some of the other people (Devon Still, Lauren Hill) and charities, and organizations (did you SEE what the Red Sox did at Fenway?!) that are able to make a larger impact in the fight against Childhood Cancer.

Last September, I wrapped a huge gold bow around the oak tree that sits on my easement (the strip of land between my sidewalk and the street)…I was going to leave it up for the whole month of September last year (2014)…

Its September 10th 2015. That ribbon has been clawed at by our cats and the squirrels. It has lost all luster and sparkle. It is dull and cloudy in color. There is no glitter left. It has become a symbol of things that are mundane and forgotten, I think. But in reality, we have kept it wrapped around our own tree for the last year because of the significance it has for our family. (It’s time to be replaced; time to bring back the sparkle and glitter and shine and brilliance.)

I wonder when “enough is enough”…when far has gone “too far”…when some is “too much”…

Seriously, look at that list I posted earlier…there are a lot of worthwhile causes in the month of September. (And more that exist in different months.) Who am I to stand up and say that Childhood Cancer Awareness should be the priority for this month?

I reached back to the entry I wrote last September, in an effort to see the wording I used when I quoted statistics. Instead of just reading the statistics part of the entry, I got wrapped up in the entire entry. Last year I paused too- I wondered if I had a voice that was worthy of speaking in this fight. I hesitated and stumbled through September and questioned my ability to help.

Then I reread the statistics for that entry:

It’s September. In this month alone, 42 children will be diagnosed every day with cancer. 42 sets of parents will hear words that will change their lives. 42 families will engage in a fight they never imagined they would call their own. Every day. 42.

1 out of every 8 of those children will die from the cancer they will fight and struggle and hope against.

10 days are already gone from this month. That means in September, 420 children and their families have already received the devastating news. Out of those 420 children, 53 will die from the diagnosis they received; regardless of how hard they fight. During the rest of September, 840 more children will sit with their parents as they learn of their cancer diagnosis; 106 of those children will die.

The lives of 420 families have been turned upside down, and inside out already in the month of September. 840 families have no idea they will receive shocking, life changing information in less than 3 weeks.

That’s just September, of this current year.

I could multiply it out for you…but I won’t.

I will simply tell you it is those faces we haven’t seen. It is the names we don’t yet know. It is the lives that don’t even know they should be bracing for impact right now.

THEY are the reason I will write and post this entry.

Because, if 20 years ago, someone would have taken the time to shout it from the rooftops, and not be afraid to share it too much or too often…

Because, if 20 years ago, another parent would have stood up and said,”NO MORE”…

Then Caitlin might still be here today; laughing, learning, loving; cheering and smiling; playing and growing.

So for all those who come after Caitlin, I will add to the many voices already out there, and I will say,”NO MORE”

Childhood Cancer needs to be brought up and spoken about, yes, to make people ‘aware.’ And then we need to take that awareness and turn it into support, for research and programs and clinical trials…and we need to find a cure…

My every post and tweet and picture on social media will not be about this. The essence of every conversation will not center around this. My every thought does not hinge on this. My every blog entry will not be about this. I will try to find the line where enough is ‘enough,’ some is ‘too much,’ and far has reached ‘too far’ and I will work to never cross it. The same energy that allows for unconditional love is the same energy drive that sustains my family’s need to participate in promoting September as Childhood Cancer Awareness Month. Like the unconditional aspect with which we love, we will engage in this because we don’t know how to NOT.

I hope that I will maintain Caitlin’s style, grace, courage and quiet beauty when I talk about it. I will post it when appropriate- and then it becomes your choice with how to respond to that.

And when I tie a brand new, shiny, glittery, gold ribbon around my front tree to replace the tattered one that is there, and when a friend rides more European mountains, partly in honor of Caitlin, and when friends decide to say “I want to make a difference too,” and while rainbows shine brilliantly…

I will keep talking, and writing, and speaking, and running, until…

Hell freezes over? Pigs fly? The cows come home? We find a cure? (Or Campbell gets her unicorn horn?)

My new Asics came in the mail the day before I left to come to NYC. Saturday I will run in memory of those we have lost, and in honor of those who fight. My friend Drew will ride through the mountains in Europe this month, as he did last year. He is asking for support not for himself personally, but through donations made in Caitlin’s (or other honory’s) name. I am honored and humbled by others who have chosen to express their support as well. We will hang gold ribbons. We will stake gold signs.We will have dunk tanks. We will speak of Childhood Cancer. We will donate and fund and advocate. Because in our house, unconditional love is now partly attached to childhood cancer and the incredible, bright and beautiful daughter we lost to that cancer.

Thank you, on this night in September, and all year long. (With absolute gratitude and respect for all that tomorrow signifies and means.) xoxo, d

[cheeringforcaitlin]

This is an article that I was interviewed for a few months ago. It is full of hope. Dr. Souweidane was also interviewed. We are honored to share Caitlin and our journey. And we are touched that the publication cover chose to use pink instead of their usual blue colors; in honor of Caitlin.

[cheeringforcaitlin]

What Lens Do You Use?

Several years ago Jeff bought me a camera; a really good camera. A Canon model that was not the professional line, but is high quality. He did some research and bought 2 lenses for my camera. One lens views 18-200mm and another that zooms from 200-500mm. Each lens has their benefits. I enjoy both for different reasons. The smaller lens is obviously lighter, and it takes beautiful pictures when I am close to something but gives me the ability to zoom in if something is a little further away. The big lens, on the other hand, allows me the ability to zoom in close when something is out of that smaller lens’s zoom capability. It’s given me some allowance for catching amazing action shots (most often, my children in motion in sports.)

Lately, I seem to have zoomed in on some of the finer details surrounding me…

During packet pick-up before the Cheering for Caitlin 5K last month, we set up at a local favorite restaurant. Obviously, there were many patrons dining at the establishment that were not involved in our race material retrieval that evening. Strangers stopped by our colorfully decorated tent to inquire about our purpose. As one man engaged me in conversation, he appropriately asked,”So who knew Caitlin?” Behind me stood some of those incredible women I am blessed to call my friends. They listened as I answered. (Their sense of a heightened awareness for the potential for my heart to ache  during sensitive times is palpable.) My answer to the man was simple enough,” She was my daughter.” The man made a kind donation, offered condolences and walked to his car. I turned, allowing the burning tears to escape as I faced my friends. One of them nodded and quietly said,”It’s ok- do not beat yourself up over that.” She caught it before I explained it…She heard me say “was” and knew I would be upset at my word choice.

And I was…upset. But I was not Caitlin’s mother, because Caitlin still is my daughter. Semantics, right? Some will certainly see that small choice of verb tense as a minute detail not worth exploring any further, much less give me reason to become so instantly angry with myself.

Shortly after that incredible Cheering for Caitlin 5K on May 17th I received an email that was quite touching. It solidified some thoughts I’ve been tossing around and wondering about.

The email came from someone who is important, and has made an impact in my children’s lives. The words were kind, considerate and genuine. The email told a story about a little girl (the daughter of the message’s author). As parent and child walked down the sidewalk, the little girl spoke with her neighborhood friend. She explained the 5K she had participated in earlier that morning and that while her little legs were tired, she ‘finished strong because that’s what Caitlin did- Caitlin had finished her fight strong…’

The little girl’s parent later sat and told her that Caitlin is finished her fight, and she did so with strength; but that we are not finished yet- and that instead, we are ‘finishing’ the fight Caitlin started…(The sentiment, story and sharing of it touched me deeply).

It’s the tiniest of detail though, right? Again, verb tense; is it really that important?

I had a friend when I was younger. Her father had lost his son too young in life. I won’t ever forget her telling me (then) that her father would tell people that ‘it’ (the heartache/grief/remembering) got easier, but it never got better.

Easier? Better? Aren't they synonyms? Can’t we simply and quickly exchange one for the other?

Sure, we COULD…just like we could substitute ‘moving forward’ for ‘moving on’…

Sometimes, when I’ve got that big lens on my camera, and I’m looking through the viewfinder I (knowingly) get lost in that snippet of a moment. I’ve been known to come out from behind that equipment and ask,” What happened?” Those who know me well have learned that zoomed in, and focused, I am clueless about what surrounded the moment I captured on my SD card. I’ve learned afterward of touchdowns and fumbles, stolen bases and strike outs, cheerleading stunts that fell and tumbling that hit beautifully. I get some of my absolute favorite pictures through that lens, but often at the cost of missing the bigger picture.

Other times, when I don’t want to haul that heavy, bigger lens on my shoulder, I just leave the smaller lens on my camera. I’ve taken pictures of the whole ‘action’ taking place in one spot. I’ve taken group pictures of people posing purposefully, or of several people interacting without awareness of my camera’s intrusion into their activity. Some of my favorite pictures have been taken through this lens, but there have been times when I’ve tried to crop out a small section of that frozen instance in time, to find that even a higher end model camera has times when being far back from the action wont allow for the details to focus perfectly when you are too distanced.

I don’t always use the right lens when I’m taking pictures.

Sometimes ‘is’ = ‘was’. Occasionally, moving on is the same as moving forward. At times, finishing is just as close as having finished, and easier is better because better certainly must be easier…but sometimes, the differences in those details can’t be ignored.

I don’t always use the right zoom when I’m looking through the lens of my life. Sometimes I look to closely and evaluate details when I should look from a distance. Sometimes I stand too far back and miss the detailed moments. I’m trying; I’m learning when to use that heavier zoom to focus on the details and ignore the rest temporarily; and when to use the lighter lens that allows me to stand further back and take it all in casually.

(And honestly, I always seem to forget to use that panoramic feature…imagine if I put that in my repertoire; when taking pictures AND in life…)

The big and the little, the finite and the infinite, the defined and the meaningless…it’s another life lesson about balance…

Random thoughts that have have been on mind…

Wisdom, or wonder...I don't know...tonight they just are...

my love, d

(This picture is honor of our vacation...one that, thru a wide angle always just ‘comes together’ and is absoluey fantastic...but only because, if we peered thru that close up view, is possible because a ‘few’ spend meticulous time preparing and planning...we thank you...xoxo)

[cheeringforcaitlin]

May...

It is May 7th. “Brain Tumor Awareness” month started 7 days ago. A friend asked why I haven't written anything yet...

What is it that I would title those who walk this journey, in my same footsteps with me? Few are friends, but not all. They aren't colleagues because we don't work together. They aren't fellow ‘widows’ or ‘orphans’ (because remember we have no word for a parent that has lost a child)….What are “they?” Are they my teammates? my allies? my associates? how about my peeps? None of those definitions are encompassing enough to embed the emotional and physical aspect of the relationship that takes place among “us.” (And, honestly, somehow I’m ok with not having a ‘word’ for it…)

Some parents who find themselves in the same situation as Jeff and I have written that Brain Tumor Awareness doesn't end with May; that it continues to go on for the next 365 days; that it should be recognized for an entire year.

In some respect that is certainly true; my family will forever consider gray a ‘sentimental’ color. But that thought doesn't sit (completely) right with me. I’ve tried to acknowledge the fights and plights that others face all year long. I try to recognize that while losing my child to a rare pediatric brain tumor, other parents, other children, other adults, other families…fight all year long against SOMEthing. This is my soapbox. This is what my family will budget time and money for. THIS is what is important to me. It doesn't have to be what’s most important to you. But I am honored and blessed and grateful if you join my family in supporting any part of it.

May is host to ALS awareness, Asian Pacific American heritage, Asthma awareness, Celiac awareness, mental health awareness, Haitian awareness, Jewish American Heritage awareness, Lupus awareness, National Bike month, National Guide Dog month, Zombie Awareness month, National Foster Care, National Skin Cancer awareness…wow, right? That is a lot of stuff to be aware of.

For me; for my family, well, brain tumor awareness is the theme that takes precedence of course. But everyone could claim any one of those as most important to them. That’s what makes us individual.

I spent 5 days in Caitlin’s You Nork at the end of April…..

I come to You Nork for different reasons.

Someone asked me,”Where should we be certain to go when we are in New York for vacation?” My response was,” Dylans Candy Bar, see Wicked, Serendipity III but only to get frozen hot chocolate and a hot dog, Central Park Carousel and the Toys R Us ferris wheel…”

There is a part of my heart that belongs to Caitlin that has been left in New York. This part of my heart requires healing that can only take place here…My theories on that concept are numerous, and likely boring so I will spare you the details. But, I do need to be there sometimes, to heal.

Admittedly though, I never come with the sole purpose of healing. My healing takes place built around other agendas and priorities. (I sneak the healing in along the way.) Those agendas vary from one trip to another; a gala, a meeting, an invitation to join a family council…

Ah, the family council…

It is as it sounds; a council made up of families. What are the requirements to “be” one of these families? Well, it’s quite simple really; you only need to have a family member that has been diagnosed with a rare pediatric brain tumor, and be willing to be a family that supports the physicians who make up the Weill Cornell Children’s Brain Tumor Project.

Easy enough, right?

Last year was the first year for the family council meeting.  We have just completed the 2nd one. Let me see if I can guess what is going through your mind right now…

“Family Council meeting?” That must mean that its depressing as hell.

In the hallway outside this conference room, hugs and smiles and tears are exchanged. Sometimes, ‘friends’ who have only known each other via social media finally embrace for the first time and speak through a means other than instant messages or email. There is a part of the connection that is immediate and undeniable. Inside the brightly lit conference room are tables, chairs, notepads, and a conglomeration of families. As defined above, each of these family members has, at one time, been on the receiving end of this statement,” Your child (loved one) has [a rare pediatric brain tumor] and we don't know how/ CAN’T treat it.”

Stop…did you read that correctly? Every family in this room (and let’s note there are about 12-14 families present) has heard words similar to the words Jeff and I heard in January of 2012. (Has it been so long? and so short? a time ago).

Families briefly introduce themselves. Most note their child’s diagnosis, and their child’s date of death. Some are almost apologetic because their child is still alive. Each family, every one, has a story.

Want to know what you would feel if you walked into this room? The heartache is palpable. The sorrow and grief of this collective group hangs in the air like water on the most humid of days. It washes over you quickly, sweeping you entirely and completely off your feet, while taking your breath away and threatening to give it back in the ‘heaviest’ of ways. You feel a momentary reprieve when a parent admits to their child “still fighting” only to quickly realize that the anxiety these families feel about follow up scans, side effects of treatment, and the potential for progression is just as high as those who emit sadness.

Why go!?!? Right? 

Well, I can’t answer for everyone in the room; but I will tell you what else I see that exists in this room…

Here, in the grief and heartache of an undeniably difficult diagnosis there is an energy that is unparalleled to anything I have ever witnessed before. Here, in this room, sit family members who have heard the worst of scenarios, and survived the truest nightmare. Here, are the “rare pediatric brain tumor” families. Here, we are no longer one of many, but instead, all the same. And, we are determined...

Here, in the tears of a merciless air, we are unified in our determination to make a change.

It is New York City (or maybe ‘You Nork’ if you’re 4 years old)…There is the rumble of the subway under your feet, the sound of the cars as they rush past beside you, blowing their horns and whooshing the air around you. There is the smell of foods from different places and different tastes. Here, if you stop long enough to look up in wonder and admiration, you most certainly stand out as a tourist…

Here, among the hustle and bustle of the downtown financial district, and the shopping of SoHo and 5th avenue; here, amid the noise of trains, and the shrieks of those peddling their wares on the street; here, on the east side, near the river; here, within a stone’s throw of Rockefeller University, close to the Queensboro Bridge, and across the street from Memorial Sloan Kettering Cancer Center. Here, in a quiet room on the 3rd floor of the prestigious Cornell Medical College. HERE….sit a dozen families. They are (relatively) unimpressed with the name on the front of the building. They care not for the bagels and hot dog and pizza smells that fill the street outside. HERE, sit the families of about 15 people who are very loved.

Here, sits the family council for the Weill Cornell Children’s Brain Tumor Project.

We spend the day discussing, talking, crying, laughing and asking difficult questions. Here, we wonder and guess; we summarize and listen. Here, we hope; we hope for those we still fight for, for those we have lost, and for those we know will come. And then, the end of the day draws near…

A final item on the agenda comes to task- a tour of the new and long fought for laboratory for the residents, fellows and physicians/researchers of the Children’s Brain Tumor Project. We have been invited to tour the (brand new) facility that houses the important, innovative, needed research that gives space to the personnel that works tirelessly trying to find answers to the many questions vital to solving the equation that will bring “us” one step closer to eradicating those rare, but vicious pediatric brain tumors.

Here, among the subway noise, and the taxis that lean on their horns, and the smells of the city, and the reputable names of universities and institutions…

Here, along the walls to the quiet hallway that leads you to this scientific workshop…

Here, are the pictures of fallen heroes of a different kind.

Here, are our loved ones- bigger than life, brighter than ever, capturing their personality. Here are the pictures of those who have brought us together, and give inspiration to those who continue to work for the nameless, faceless, persons to come…

They are respected and “give inspiration” to make the researchers search harder…

Here, it is “brain tumor awareness” all year long. Here, a gray awareness ribbon metaphorically hangs in the air 365 days a year. Here, they don't need “May” to remember…

It is the the fifth month of the year. There is a lot to be aware of…my family will take the opportunity to talk about brain tumor awareness; but not without the recognition that many people fight many battles on many different fronts all year long…

It is May- so I will speak; I will stand on my soapbox; I will beg that you take a few moments to consider “brain tumor awareness”…

And then I will end my soapbox discussion by thanking those of you who have registered to participate in our Cheering for Caitlin 5K locally and virtually; I am forever grateful that you will participate for your loved one…

June will bring about more awareness, as it should…

but today; it is still May… so I will embrace May…

thank you for embracing it with me…

all my love, in May, and always….d

[cheeringforcaitlin]

Now, it is ‘right’...

A few months ago, Jeff and my dad built a barn door for the area between my kitchen and laundry room. It is beautiful, and just like I had imagined it would be. They went to Home Depot and returned home with the necessary equipment to hang it from the track that had been very purposely chosen and delivered via Amazon. On their return from the store, Jeff pulled  something out of the bag. “Look, I got a handle for the door.” I stared at him, quietly. “I know, it isn't the right one.” Jeff has begged and pleaded with me to look online and find it. He has asked me to go to whatever store I need in order to acquire the ‘right’ handle to put on the door. He keeps asking me what I have in mind. I keep responding the same way; I’m not sure, but I’ll know when it’s right….

The door still has no handle.

This isn’t a new form of communication for Jeff and I. It’s evolved and changed a little over the nearly 2 decades we have been together, but it’s always been there. I’m typically decisive and (admittedly) have a hard time changing my mind once it’s set. (Some see that as my German heritage shining through in my personality.) Here is what doesn’t get accounted for though…I don't ALWAYS have to have an opinion. (Really)

Jeff and I have had a similar type of conversation for the last few years. Bound and determined to make a difference in the fight against these killers we call ‘rare pediatric brain tumors’ I have discussed the idea of forming a foundation. Jeff fully supports and encourages this idea. I have talked, researched, thought about and brain stormed. Sometimes, I’ve done all this on my own. Sometimes I’ve enlisted the help of willing friends.  I pick up my foot to take a step forward but then I always step back. Jeff quietly asks me ‘why not’ regularly. I’ve answered him in a familiar way: I’m not sure…but I’ll know when it’s right….

DIPG stole Caitlin away from us all too soon. That ‘rare pediatric brain tumor’ we had never heard of before just swept in like darkness and left just as quickly with our daughter’s life. Do you know what happens if you use the search engines located on the websites for the National Institute of Health (NIH) and the Center for Disease Control (CDC), and you type in DIPG or Diffuse Intrinsic Pontine Glioma? You will get this response: Your search has 0 results.

ZERO! Does that make your stomach turn? It isn't even recognizable in a search engine of two of our government’s biggest medical websites.

Here’s a bigger hit to the gut…DIPG is not the only rare pediatric brain tumor that strikes out and receives no acknowledgment or funding from the government. These rare occurring diagnoses are referred to by the government as ‘orphan diseases.’ Can you begin to guess why? Because they do not affect a substantial amount of the population. You think I’m exaggerating, right? How could we possibly use this term to talk about ANY part of our population…this is a quote directly off the NIH website….”Specifically the term orphan disease is used to designate diseases that affect only small numbers of individuals (so-called health orphans).” Forgive me, as I quote the NIH one more time because they say my next thought so perfectly…”Because of their individual rarity, genetic diseases and other types of rare diseases are under-represented in healthcare coding systems; this contributes to a lack of ascertainment and recognition of their importance for healthcare planning and resource allocation, and prevents clinical research from being performed.” The last part of the quote is the most important part to understand…Clinical research (“resource allocation”) is prevented because of the limited number of people that would benefit since orphan diseases occur so rarely.

Hold that thought for a moment….

Enter Dr. Mark Souweidane and his partner at the Weill Cornell Children’s Brain Tumor Project, Dr. Jeffrey Greenfield…two men who have decided these ‘rare pediatric brain tumors’ (aka orphan diseases) deserve more attention, demand more research…they believe the patients who have these diagnoses deserve hope…

Let me tell you…It is finally right…the right moment, the right words, the right mission, and the most perfect people…

Together with 3 courageous women, our incredible families and friends, and our ‘rare’ stories, we have formed a public charity (501(c)3). The mission: to raise awareness of rare pediatric brain tumors and raise funds in support of the Weill Cornell Children’s Brain Tumor Project.

We have only begun…we still need to finish many details…but we are here… I hope you will join us as we open doors that previously have not been opened. I hope you venture with us down a path that requires more dedication and awareness. I hope you will join us, as together, we make a much needed change.

Ladies and gentlemen, I present

[cheeringforcaitlin]

Moving on, or moving forward?

Shortly before Christmas, a good friend of a good friend sent me a message; she told me she was glad to see I was moving forward. Those were the words she used, “moving forward.” I found them striking and have kept them close in the forefront of my mind since she sent them to me.

I’ve read, and then read some more, that parents who live through the death of their child commonly experience symptoms of Post Traumatic Stress Disorder. I’ve considered it, thought about it and early on I concluded that diagnosis may be appropriate in the beginning stages of a parent’s grief. Personally, it showed itself in clarity when one of my own kids tripped or had a headache, when I had to take a route past (or toward) the hospital where Caitlin was diagnosed and cared for. The list could go on, but I expected this initially.

Recently, I’ve changed my mind ….I wonder, if loved ones (especially parents) that survive the death of a child live with some manageable symptoms of post traumatic stress disorder for a long time. (forever?)

It hit me a week or so ago when I was running down my schedule for February with a friend, trying to coordinate weekends, and I casually said,”I fly to Atlanta on the 13th (big pause)…(tears)…(catch my breath)…it’s a Friday?!” (I’m grateful for a friend who knows me so well that she anticipated my reaction as if she has been prepared for my moment of realization; she offered promises of support and unconditional love, as she always does.)

I panicked…not full on panic attack…but it caused me anxiety then, and has since. (As a side note, it doesn't worry me for myself; it worries me for those I love. I wish I could wrap them ALL up in bubble wrap and tell them not to move for 24 hours, so that nothing bad would happen to them. ) Realistically, I have lived through several Friday the 13ths since January 2012, (5 to be exact) and nothing catastrophic has occurred. In my head it should just be a day like any other; but it isn’t….it just isn’t.

I believe  that our lives are not ‘destined,’ but instead, made up of the experiences and choices and decisions we make as we move through life. If any of those decisions or experiences had been different they would impact (in a small or big way) who and where we are now; what we do and our priorities. It’s a little existential in thought, but following that line of thinking, everything we experience makes us what we are at a given moment. (Stick with me- I’m drawing parallel lines, but soon they’ll converge.) So in that line of thought, we should never discount any moment or experience (even the unpleasant ones). You shouldn’t be able to “move on” from an experience.

We have moved FORWARD from Caitlin’s illness, and death. We have not moved ON. That is why these words have resonated so deeply with me. Sometimes we move on from something; bad relationship, poor decision, horrible job…It can impact who we are, but we move ON AND AWAY from it; we put the experience in our bank, count it for the importance it once had, and then file it as nothing more than “history.”

We will not move ON from Caitlin.

I will not move ON from Caitlin.

I will move (mostly) FORWARD. I will laugh and love and live every single day.

Some days, I may hesitate in that forward motion. (I may even take a step backward momentarily.) But I will make choices, for myself, and for those I love, and I will continue to move forward.

But I will never move on. I don't want to move on. I CAN’T move ON.

Because I love her, and miss her…so much, every day.

When I close my eyes, I see a picture, (or maybe a short video clip) of a journey that moves forward. Specifically, it is MY journey forward. It looks like this…

Picture a forest that runs deep with trees. Through the trees is a path; not well worn, but distinctive enough to follow without losing my way. As I move, putting one foot in front of the other, my senses are in a heightened awareness. I can clearly hear the snap of dry branches under my foot, the rustles of the bushes as small animals move about. There are trees as far as my eye can see, blurring the horizon.

As I look down the path that extends infinitely through the trees, I can see the sun shine through in straight pieces as it is sifted through the leaves of the massive branches before me. As I move forward, I experience the cooler parts of the shadows of those large natural structures. I shiver to keep warm and often doubt myself in the darkness. But a step or two forward and I am able to turn my head toward the beam of light that filters down through the trees and touches the ground. I pause, turn my head toward the sky and with my eyes closed, and a gentle, content smile, I feel the warmth of the sun on my face. It finds a way to nourish and heal and fill me. Another few steps find me in the dark shadows again…

The heartache and pain and fear of those cold dark shadows that make me shiver and squint make the brightness of those sunbeams so much more vibrant and warm and comforting.

Friday the 13th will come. And with the help of good friends and family, I will survive that shadow until I step back into the sun.

The journey down this road is infinite; it is a softly worn path, built of cold, dark shadows and bright, warm beams of light.

But each step on this path is one that moves forward, with the ability to bring what makes me “ME.” I will carry my pack, with what has made me what I am. I will trust in what is bigger than all of us to guide me.

I will not move on.

But I will move forward.

Thanks, to each of you, for moving forward (and not on ((and away)) from Caitlin) with me…every day I get a message or a text or a special something from one of you. In that moment I know how blessed I am, that you have loved, and remembered, and have not forgotten along the way…my heart is indebted to each of you…

all my love tonight, as you find your own sunbeams, d

[cheeringforcaitlin]

#hashtag

The coming days offer a myriad of challenging moments to my family, and to me; for many reasons ranging from physical to emotional. Tonight at 10pm, is the half marathon at Disney that I signed up for a long time ago; determined to have a goal that would help me feel strong this week. The days that follow lead to Tuesday, a heartbreaking day for our family as we remember Caitlin’s last moments with us, and when she skipped up that rainbow in our backyard to heaven. Coupled with that is an opportunity to possibly start the process of building something that may ultimately bring hope to families who find themselves in similar situations. So a trip to NYC for the beginning few days of the week has been quickly scheduled.

It’s busy. Its emotional. Its physical.

I’ve asked myself several times in the last week,”Am I strong enough to run it/ feel it/ survive it/ build it? How strong do I think I am? I mean, really?”

The media has often, and frequently, discussed, interviewed and written articles about ‘technology’ …social networking, the internet, smartphones…

Complaints are that these things are used too often and too inappropriately; at the wrong times, for the wrong reasons and send the wrong message.

I disagree

the internet, email/text, Facebook, twitter, instagram, tumbler…

These avenues have allowed for an awareness to be shared, for me to express myself, and for many, many supportive interactions to take place. Interactions that often come exactly when I need them, and have given me courage and held me up and wrapped me in love when I have needed it most. I’m grateful for these modes of technology. I have to admit though, I haven’t really caught on to the hashtag part of it. I like it, because it engages that creative part of my brain while using words. The person writing the hashtag gets only a few words to say something of importance, but without further explanation. #hastobeshort

So while I was on an 11 mile training run the other day, I had lots of time to think. (I may have had TOO much time to think.) This was part of my thought process. I wondered first, (and again) how strong I really am. I was reminded of something I’ll explain in a moment, and wondered what people would say if they had to define or describe themselves or a moment in a hashtag. #notthateasy

#blessedwithfriendsandfamily

#firstdatetacobell

#mydogisabeast

#myfriendishavingagirl

#loverainbows

You get the idea, right? #itsmyfirsttry

I hit mile 7 of that run earlier this week, and asked myself over and over,” How strong do you really think you are?” 

What happened next is the absolute truth, I swear it. Some of you won’t believe me, but it’s complete honesty. #nolie

I looked up into an almost cloudless sky, for no particular reason, and I saw this: 

#IKNOWRIGHT?

It is something that defies a definition, or any kind of explanation in my opinion. But it reminded me of something a friend sent me a few weeks ago. I’m going to ‘borrow’ it and make it my own; starting tonight, as I run on angel wings. Maybe I’ll keep it for this week, maybe longer. It’s my new hashtag…Let me know what you think about it...

How strong do I really think I am?

#Caitlinstrong

[cheeringforcaitlin]

There is little left for me to say after watching this video. The entire video is only 10 minutes long, and worth watching. But, if you want to start watching from Caitlin's story, it begins at 3:50.